Living and Parenting as a Liberal Feminist Christian

Chronic Illness in the Summer of 2013

Posted on August 12, 2013

Last month, a doctor/blogger named Rob Lambert published an article called, “A Letter with Patients with Chronic Disease.” In his open letter, Dr. Lambert expresses his sympathy toward people who suffer from every form of chronic disease–especially the mysterious kinds that are invisible to the outside observer.

He writes:

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

My husband and I only started using the phrase “chronically ill” to describe his health in the past year. In the years before that, we used language like “tends to be sick a lot,” or “has some health problems,” or “hasn’t felt good in a long time.” Those descriptors never really communicated the extent of the situation. I don’t know that chronic illness really communicates the problem, either, but it’s closer. For the first time in a long time, though, people seem to be getting it. Language alone can’t be responsible for that–this summer, Chalupa has missed a lot of work, has spent more than two months on Prednisone, has been to the ER twice, and has been unable to socialize. We’ve gone out together four times this summer–twice to the movies, once to Ruthie’s ballet recital, and once to a wedding–but otherwise he and I have not been out together all summer. Every activity I’ve taken Ruthie on, she and I have been on our own.

I’m glad we’ve decided to embrace the term “chronically ill.” Although his individual diagnoses don’t seem that daunting (and they’re really not mine to discuss in detail), they combine into something that can be pretty overwhelming. The scenarios that Dr. Lambert describes in his blog post? They sound very familiar. I’ve watched Chalupa struggle to get doctors to take him seriously because they tell him, “Well, your breathing tests come back pretty normal, so there must not be anything wrong.” I once listened to a doctor tell him that the only thing keeping him from feeling better was that he didn’t exercise enough–even though he has always been as active as his lungs will allow him to be. Even now, he rides his stationary bike and lifts weights several times a week if his body will allow it.

We have discovered that doctors don’t like enigmas. They don’t like it when all the tests come back clear, but the patient is still miserable. Imagine our relief when, in 2010, Chalupa switched primary care physicians, and his new doctor began to discover things that had been missed for years. Things that he could begin treatment for! These weren’t “out there” or controversial diagnoses–they were confirmable, measurable conditions or illnesses.

Right now, Chalupa is in the thick of a bad spell. We’re a few months in, with maybe a few months to go. I find myself praying that he doesn’t encounter another setback–someone smoking on the sidewalk as he goes to work, drywall dust from renovations at the office, high allergen days, mold in a movie theater, an especially hot day. I know it is exhausting for him to feel sick all the time, and every day that he feels a bit better than the day before, I hope that we’re at the start of an upward trend.